The Ocean Lullaby

What a week it's been!  Every time I think that I'm going to sit down and write in this blog, something pulls me away.  The balance of work, school, parenting, family and whatever else I can squeeze in there, sometimes has me scattered everywhere (literally and figuratively!)

Summer therapy is going well.  When we arrived at OT last week, the therapist told me that she and the Speech therapy were ready to graduate Nea out of therapies.  Her progress has been so good, and she continues to move along the continuum at a steady rate.  Of course I panicked a bit.  It felt odd to think that we would leave these people who have been with us from the very beginning.

When Nea is done with OT, she goes to the Speech Therapist's room for her session. The OT will then come and talk to me and tell me how things went.  She came out into the waiting, looking somewhat exasperated and like she just wrestled an alligator saying....

"I changed my mind."

Nea's focus is still skitchy.  She's consistently inconsistent.  She may need the extra help when school comes to have the extra OT time.  So we decided to keep OT on the books for awhile longer and see how the transition back to school goes.

However, she's ready to graduate from speech therapy.  Nea has learned tons, she does well and she will do just about anything that Diana asks of her.  She astounds us all with her receptive language and connections she makes that the rest of us don't quite get at first.  But Diana believes the next rung on the ladder for her is one that involves pragmatic communication.  Nea's motor planning has improved tremendously, and she will repeat a word correctly if you break it down for her.  What she needs now is using all of that language in social situations.  She needs to be part of group activities with peers and talking about toys, sharing items and exploring new things.  Diana can't give her that in 1:1 therapy.  She's beyond that now.

It's exciting and scary all at the same time.

Something new I'm noticing these days is more extensive pretend play.  Her stuffed animals are starting to play part of a scene where she does introductions.  "Hi, I'm Nea.  How are you? Okay?  Do you want to play?"  It's amazing to watch this part of her unfold.  She still doesn't like me to insert myself into her play.  But she will have that little party very near me, or even on my lap.  If I try to play a role with one of the people she gets very frustrated.  So I quietly observe and try to work on "who, what, when, where and why" as she's playing.  "What are they doing?"  "Who is the Mommy?"  "Where's the dog going?"  Sometimes I get answers, sometimes I get totally ignored.  

Dressed as "the princess"

Pretend play

She also has been doing a little more singing.  The ABC's are a favorite as well as "Itsy Bitsy Spider".  She can do the ABC's easily from start to finish. Itsy Bitsy is only the first phrase, and then start all over.  Singing utilizes a different part of her brain, so I'm happy to see her doing more of it.  Both are repetitive songs, so it's not too surprising she has caught on to them.

But tonight she surprised me.

Since Nea was just a couple weeks old, I have been singing her the same lullabye.  I would sing it only when she nursed.  I wanted the song to be associated with something so wonderful and pleasurable for her so that long after our breastfeeding relationship was over, the song would be connected to some very deep memories.  (Yes, I'm that crazy woman down the street) And I have to say as the years have gone by whenever I would sing that lullaby, Nea would look at me and smile.  It was something that passed between mother and daughter.  Only her and I shared the memory.  Of course she can't tell me what she's thinking when she hears it, but I always felt that our hearts spoke to each other as I sang the song.  (Yes, I'm that crazy woman too).

Here are the lyrics:

I'm the body of the ocean
The roar of the sea
I can swim with the dolphins and they sing to me.

And I roll on the waves
And I wash through the deep
As I go to sleep

And here is a link to the clip of the soundtrack from the CD:

Click on Track 4 (Ocean Lullaby)

I fell in love with this song the first time I heard it.  I had no idea how much Nea would love water and how much comfort water brings her.  Or maybe, somehow, on some unconscious level as I was nursing my newborn......I knew that life-giving water would soothe her for years to come.

Tonight while sitting in our rocker/recliner, Nea climbed into my lap  with her pillow and her blanket for some cuddle time.  She didn't want to cuddle chest to chest, but she likes to lay her back against me (as if I'm part of the furniture) and "rocka-rocka".   She seemed a bit restless so I thought that the lullaby might be a good idea.

.....and she started signing with me.

Every word.

I'm not sure I made it to the end, the tears started and I couldn't stop them.  I never dared to dream that she would ever sing this song with me.  I always just assumed that it was going to be a nice memory that her and I had together.  She proved me wrong.  Again.

And for a few brief moments mother and daughter rested in the serenity and safety of each other.

Letting their hearts sing the only song it knows......

Pure love.

Traveling with Autism

I am giving fair warning right now that this post is full of piss and vinegar.  I'm not going to be gentle with it, or tiptoe around topics.   Honesty has always been important to me when I write in this blog, and I'm not stopping now.

Family vacation.  Many families don't even attempt something like a big family vacation for fear a Griswold situation could occur at any moment.  But seeing family is important, and they just happen to live hundreds and hundreds of miles away.

We've traveled with Nea on this trek every year.  The first time she was 3 months old.  It was rather easy.   Well, aside from traveling with donor milk to be able to put in my SnS while breastfeeding (long story, later post).  We were darn proud of ourselves for doing so well and not losing one drop of precious milk over the course of a week.

Our next trip, Nea was 11 months old.  And honestly, it is all kind of a blur.  We were traveling for a funeral, so everything is fuzzy about the trip.  Too much stress, too much grief and too much anxiety of what was awaiting us.

We went last summer, and Nea was 2.  She had not been diagnosed yet, but we were waiting to go to the evaluation in August.   She traveled fairly well during that trip and I had plenty of activities for her to do along the way.  We stopped frequently so she could run around at rest areas and spent an entire day at the half-way mark town for swimming and relaxing.  Overall, not too shabby.

This time we had gained a whole bunch of different information.  We know about sensory issues and sensory overload.  We know that stimming means she is out of balance and we have to address her needs.  We understand that anything "out of routine" can send her into a tailspin.  We were going to hit her with a bunch of new experiences and we had to make sure we could keep meltdowns down to a minimum.  Again, she traveled very well.  Her iPad was a God-send to keep her entertained with movies and games.  Grandma made an "activity kit" full of fun things like stickers, crayons, markers, etc.  We stayed at a family members home this time (not hotel) and had access to a fridge.  This allowed us to keep favorite foods in stock (Greek yogurt is a must) and cheese.  We made sure to pack trains and tracks so she could build whenever she wanted, which she tends to use as an escape when she needs.

On the road

We had a wonderful time.  It was a memory filled trip with a train museum, a butterfly pavilion, the zoo, and a water park.  Plus it was the 4th of July holiday and lots of backyard fun.  We had a fabulous time and she made adjustments quite well.      

As you can imagine, we spent a lot more time out and about at all of these places.  We also ate many meals at restaurants over the course of 10 days.  Her Poppa and I are firm believers about not putting kids in impossible situations and then making expectations ridiculous for them.  I don't take Nea to the store when she's hungry and cranky.  We skip going out for dinner if she's had a bad day.  A restaurant is just something that has a potential of going really wrong, really quickly.  All that said, we are also well aware that circumstances are beyond some parents control (including ours) and you have to do what you have to do.

Watching her iPad in a restaurant

So while on the road, we gauged where we were going to eat on how we thought she could handle it.  If it was a long day or stressful day, we did a fast food place and brought stuff back to the house.  If things were more smooth, then we did the sit-down restaurant thing.  But even on one of Nea's great days, her differences are starting to really stand out.

Getting stuff out of her "purse"

Let's get one thing perfectly clear.  I'm not ashamed of her, or embarrassed by her.  But what frustrates me about a few of these situations has to do with me being afraid for her.  The "odd looks" and the "why can't you control your kid" stares are a glimpse into the struggles with society she is going to face.  I can protect her now.  I can glare back now.  I can Harper Valley PTA a rude person now.  But that's not always going to be true.  And I hate the fact that she's gong to even have to endure it.

How do you not become incredibly irate knowing that your child is going to face some pretty cruel people in the world?

Riding on the train

Nea seems to do more verbal stimming when she is faced with a stressful situation.  We don't hear it much at home, but we do hear it when we are out and about.  At one restaurant dining experience, we finally put her headphones on her, plugged them into her iPad and let her eat while shutting out the world.  She needed to "check out" and we had to make do with what we had at the time.

If she were 1 or even 2 and did these sort of activities (babbling, screeching, flapping) no one would bat an eye at her.  But she is 3, and society has different expectations of her.

And the pacifier.  Everyone has an opinion.  And quite frankly, I'm sick of hearing it.   So here are a few responses I would LOVE to be able to say to the rude, opinionated person who insists they need to express their concern.....

Jackass:  "She still uses that thing?"
Me:  "That 'thing' is what keeps her from flapping her arms around and screaming/screeching every 3 minutes.  Trust me, you want that 'thing'...the alternative will make you  even more uncomfortable."

Jackass:  " I'm surprised you haven't gotten rid of the pacifier"
Me:  "You know, I was surprised too when I saw your insensitive brain stuck up your ass, and yet, I was able to keep my mouth shut because it's none of my business."

Jackass: "You haven't weaned that?  Boy you're in for a night mare."
Me: "You think?  You know what, I think you should share in my parenting journey intimately.  Your shift starts at 9pm.  There are no breaks, there is no rest, there are no tap-outs."

Jackass:  "Hard to believe you still have her on those...."
Me:  "I know.  I have not done any research, talked to any professional, or sought any assistance on the best way to transition her.  Potty training or paci removal.....NEVER at the same time....what's your preference random citizen?"


I don't want her to have those stares and for people to look at her as "odd".  It breaks my Mommy heart.  And yet, I know I can't stop it.  Can I harden her to it?  Doubtful, I'm not sure she's wired that way.  She's a loving, accepting child....and I think it's a great quality.  Cynicism will come soon enough, I'm not teaching it to her now.

I know I could say these things.  I know I have the ability to squash an insensitive rude person like a bug.  I can be full of venom in a pretty frightening way.  But what does it gain me?  Does it bring anyone closer to understanding Autism?  Does my pissy attitude help the situation or just ignite it?

I know the answer.  It does nothing.  And I'm grateful for this blog, as well as amazing people in my life who offer support and encouragement.  So I continue try to find ways to use those situations for good and to make sure that people can move more towards neuro-diversity instead of "you're weird, you're not like me."

But if you wake the Mama Bear........